I am sick. I feel the weight of the disease more and more everyday. The weight of fighting for years. My body hurts and is suffocating. I am exhausted, and scared. And unfortunately I am very aware that I exist in a body that is wilting at a much quicker pace. Or so it feels. And mostly, that I am mortal. I am in a full blown mid life crisis. (Honestly, I feel like it’s 4/5 life crisis.)

It doesn’t help that I’m 42, the age my father was when he died, and my daughter is 11, the age I was when he passed. He’s been gone 31 years and I finally know just how young he was, how scared he must have been, how powerless he must have felt in his final days.

When my father passed, I thought it made me an expert in life and death. It didn’t. It made me an expert in loss, and in grief. Now I think of death much differently. MS is not a death sentence, but it sure feels like the person I was disappeared. 

Adjusting to MS has been difficult. Figuring out what to do for menial tasks that have become very hard to accomplish has been overwhelming and a pain in the ass.

I try to stay positive, to “will my body” to move, to fight, to be better but it doesn’t work. 

I am not an ideal spokesperson to look upon on how to handle or accept the changes disability comes with. I think MS sucks, it blows, it blows real hard. 

I have closed myself off more and more as I wilt. Wanting to be remembered as I was. Independent, self reliant, vibrant, adventurous, a real fire cracker ;). And as a result I avoid situations where I could be “found out”, It isn’t healthy.

But in some aspects, I’m ok. I’m doing good.

I realize the best way for me to “survive” is to create memories, memories that give my kids strength, memories that will last long after I am gone. I will take advantage of my time, and hopefully I have lots of it. 

For instance, 

I spent the winter months, the months I can barely go out, painting. I painted and I forgot where I was. It was distracting, defining, and simply awesome. 

It was one of the best winters I’ve had in a long time. The pieces are close to my heart, revealing, and inspired by life.

And since the snow has melted, and the weather warmed up. I have enjoyed the outdoors as much as I can.

On too hot days I wait for evenings, light breezes, and shade

I’ve stared at the sky, at the clouds, the birds, the moon, the stars, and the colors

I saw a shooting star and fireflies

I saw the day, and the night

The sun and the rain

I crossed the land and the sea,

I listen to kids playing, birds chirping, and all the sounds of nature

And I took pictures, lots and lots of pictures

It has been refreshing, peaceful, and another opportunity to define myself

I’m ok~ish